Feature

Babies are dying of syphilis. It’s 100% preventable.


 

Adriane Casalotti, chief of government and public affairs at the National Association of County and City Health Officials, warns that the United States should not be surprised to see case counts continue to climb. “The bugs don’t go away,” she said. “They’re just waiting for the next opportunity, when you’re not paying attention.”

Ms. Yang waited until the end of the day, then called the clinic to see if Angelica had gone for her shot. She had not. Ms. Yang would have to block off another half day to visit Huron again, but she had three dozen other cases to deal with.

States in the South and West have seen the highest syphilis rates in recent years. In 2017, 64 babies in Fresno County were born with syphilis at a rate of 440 babies per 100,000 live births — about 19 times the national rate. While the county had managed to lower case counts in the two years that followed, the pandemic threatened to unravel that progress, forcing STD staffers to do COVID-19 contact tracing, pausing field visits to find infected people, and scaring patients from seeking care. Ms. Yang’s colleague handled three cases of stillbirth in 2020; in each, the woman was never diagnosed with syphilis because she feared catching the coronavirus and skipped prenatal care.

Ms. Yang, whose caseload peaked at 70 during a COVID-19 surge, knew she would not be able handle them all as thoroughly as she’d like to. “When I was being mentored by another investigator, he said: ‘You’re not a superhero. You can’t save everybody,’” she said. She prioritizes men who have sex with men, because there’s a higher prevalence of syphilis in that population, and pregnant people, because of the horrific consequences for babies.

The job of a disease intervention specialist isn’t for everyone: It means meeting patients whenever and wherever they are available — in the mop closet of a bus station, in a quiet parking lot — to inform them about the disease, to extract names of sex partners and to encourage treatment. Patients are often reluctant to talk. They can get belligerent, upset that “the government” has their personal information or shattered at the thought that a partner is likely cheating on them. Salaries typically start in the low $40,000s.

Jena Adams, Ms. Yang’s supervisor, has eight investigators working on HIV and syphilis. In the middle of 2020, she lost two and replaced them only recently. “It’s been exhausting,” Ms. Adams said. She has only one specialist who is trained to take blood samples in the field, crucial for guaranteeing that the partners of those who test positive for syphilis also get tested. Ms. Adams wants to get phlebotomy training for the rest of her staff, but it’s $2,000 per person. The department also doesn’t have anyone who can administer penicillin injections in the field; that would have been key when Ms. Yang met Angelica. For a while, a nurse who worked in the tuberculosis program would ride along to give penicillin shots on a volunteer basis. Then he, too, left the health department.

Much of the resources in public health trickle down from the CDC, which distributes money to states, which then parcel it out to counties. The CDC gets its budget from Congress, which tells the agency, by line item, exactly how much money it can spend to fight a disease or virus, in an uncommonly specific manner not seen in many other agencies. The decisions are often politically driven and can be detached from actual health needs.

When the House and Senate appropriations committees meet to decide how much the CDC will get for each line item, they are barraged by lobbyists for individual disease interests. Stephanie Arnold Pang, senior director of policy and government relations at the National Coalition of STD Directors, can pick out the groups by sight: breast cancer wears pink, Alzheimer’s goes in purple, multiple sclerosis comes in orange, HIV in red. STD prevention advocates, like herself, don a green ribbon, but they’re far outnumbered.

And unlike diseases that might already be familiar to lawmakers, or have patient and family spokespeople who can tell their own powerful stories, syphilis doesn’t have many willing poster children. “Congressmen don’t wake up one day and say, ‘Oh hey, there’s congenital syphilis in my jurisdiction.’ You have to raise awareness,” Arnold Pang said. It can be hard jockeying for a meeting. “Some offices might say, ‘I don’t have time for you because we’ve just seen HIV.’ ... Sometimes, it feels like you’re talking into a void.”

The consequences of the political nature of public health funding have become more obvious during the coronavirus pandemic. The 2014 Ebola epidemic was seen as a “global wakeup call” that the world wasn’t prepared for a major pandemic, yet in 2018, the CDC scaled back its epidemic prevention work as money ran out. “If you’ve got to choose between Alzheimer’s research and stopping an outbreak that may not happen? Stopping an outbreak that might not happen doesn’t do well,” said Dr. Frieden, the former CDC director. “The CDC needs to have more money and more flexible money. Otherwise, we’re going to be in this situation long term.”

In May 2021, President Joe Biden’s administration announced it would set aside $7.4 billion over the next five years to hire and train public health workers, including $1.1 billion for more disease intervention specialists like Ms. Yang. Public health officials are thrilled to have the chance to expand their workforce, but some worry the time horizon may be too short. “We’ve seen this movie before, right?” Dr. Frieden said. “Everyone gets concerned when there’s an outbreak, and when that outbreak stops, the headlines stop, and an economic downturn happens, the budget gets cut.”

Fresno’s STD clinic was shuttered in 2010 amid the Great Recession. Many others have vanished since the passage of the Affordable Care Act. Health leaders thought “by magically beefing up the primary care system, that we would do a better job of catching STIs and treating them,” said Mr. Harvey, the executive director of the National Coalition of STD Directors. That hasn’t worked out; people want access to anonymous services, and primary care doctors often don’t have STDs top of mind. The coalition is lobbying Congress for funding to support STD clinical services, proposing a three-year demonstration project funded at $600 million.

It’s one of Ms. Adams’ dreams to see Fresno’s STD clinic restored as it was. “You could come in for an HIV test and get other STDs checked,” she said. “And if a patient is positive, you can give a first injection on the spot.”

On Aug. 12, Ms. Yang set out for Huron again, speeding past groves of almond trees and fields of grapes in the department’s white Chevy Cruze. She brought along a colleague, Jorge Sevilla, who had recently transferred to the STD program from COVID-19 contact tracing. Ms. Yang was anxious to find Angelica again. “She’s probably in her second trimester now,” she said.

They found her outside of a pale yellow house a few blocks from the homeless encampment; the owner was letting her stay in a shed tucked in the corner of the dirt yard. This time, it was evident that she was pregnant. Ms. Yang noted that Angelica was wearing a wig; hair loss is a symptom of syphilis.

“Do you remember me?” Ms. Yang asked.

Angelica nodded. She didn’t seem surprised to see Ms. Yang again. (I came along, and Mr. Sevilla explained who I was and that I was writing about syphilis and the people affected by it. Angelica signed a release for me to report about her case, and she said she had no problem with me writing about her or even using her full name. ProPublica chose to only print her first name.)

“How are you doing? How’s the baby?”

“Bien.”

“So the last time we talked, we were going to have you go to United Healthcare Center to get treatment. Have you gone since?”

Angelica shook her head.

“We brought some gift cards...” Mr. Sevilla started in Spanish. The department uses them as incentives for completing injections. But Angelica was already shaking her head. The nearest Walmart was the next town over.

Ms. Yang turned to her partner. “Tell her: So the reason why we’re coming out here again is because we really need her to go in for treatment. ... We really are concerned for the baby’s health especially since she’s had the infection for quite a while.”

Angelica listened while Mr. Sevilla interpreted, her eyes on the ground. Then she looked up. “Orita?” she asked. Right now?

“I’ll walk with you,” Ms. Yang offered. Angelica shook her head. “She said she wants to shower first before she goes over there,” Mr. Sevilla said.

Ms. Yang made a face. “She said that to me last time.” Ms. Yang offered to wait, but Angelica didn’t want the health officers to linger by the house. She said she would meet them by the clinic in 15 minutes.

Ms. Yang was reluctant to let her go but again had no other option. She and Mr. Sevilla drove to the clinic, then stood on the corner of the parking lot, staring down the road.

Talk to the pediatricians, obstetricians, and families on the front lines of the congenital syphilis surge and it becomes clear why Ms. Yang and others are trying so desperately to prevent cases. Dr. J. B. Cantey, associate professor in pediatrics at UT Health San Antonio, remembers a baby girl born at 25 weeks gestation who weighed a pound and a half. Syphilis had spread through her bones and lungs. She spent five months in the neonatal intensive care unit, breathing through a ventilator, and was still eating through a tube when she was discharged.

Then, there are the miscarriages, the stillbirths and the inconsolable parents. Dr. Irene Stafford, an associate professor and maternal-fetal medicine specialist at UT Health in Houston, cannot forget a patient who came in at 36 weeks for a routine checkup, pregnant with her first child. Dr. Stafford realized that there was no heartbeat. “She could see on my face that something was really wrong,” Dr. Stafford recalled. She had to let the patient know that syphilis had killed her baby. “She was hysterical, just bawling,” Dr. Stafford said. “I’ve seen people’s families ripped apart and I’ve seen beautiful babies die.” Fewer than 10% of patients who experience a stillbirth are tested for syphilis, suggesting that cases are underdiagnosed.

A Texas grandmother named Solidad Odunuga offers a glimpse into what the future could hold for Angelica’s mother, who may wind up raising her baby.

In February of last year, Ms. Odunuga got a call from the Lyndon B. Johnson Hospital in Houston. A nurse told her that her daughter was about to give birth and that child protective services had been called. Ms. Odunuga had lost contact with her daughter, who struggled with homelessness and substance abuse. She arrived in time to see her grandson delivered, premature at 30 weeks old, weighing 2.7 pounds. He tested positive for syphilis.

When a child protective worker asked Ms. Odunuga to take custody of the infant, she felt a wave of dread. “I was in denial,” she recalled. “I did not plan to be a mom again.” The baby’s medical problems were daunting: “Global developmental delays ... concerns for visual impairments ... high risk of cerebral palsy,” read a note from the doctor at the time.

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